Does it continue to get worse with time ?

Discussion in 'Fibromyalgia Main Forum' started by karkel, Jan 22, 2011.

  1. karkel

    karkel New Member

    OR can it get better ? I'm afraid.
  2. TigerLilea

    TigerLilea Active Member

    Everyone is different. For me, I continue to get worse as time goes by. I have never had a remission from CFS and I have had this now for 20 years as of next month. It's something that I have had to learn to live with and accept. Life goes on and we have to learn to make peace with our illness. If you don't, you will end up getting depressed.
  3. karkel

    karkel New Member

    I just got dx but I have had since 2004 after breast implants surgery gone by (by the way I no longer have them) was hoping it would make the pain go away but never did. I'm 51. Can I ask your age ? And what you take for the pain ? Thansk it's nice having people to talk too.
  4. TigerLilea

    TigerLilea Active Member

    I'm the same age as you are - 51. I don't have FM so the only time pain is an issue is when I am actually physically moving and I get burning muscles, not FM tenderpoint pain. The pain stops within seconds of stopping whatever I am doing so I don't have to take pain meds.
  5. karkel

    karkel New Member

    what do have cfs ?
  6. TigerLilea

    TigerLilea Active Member

    I have CFS; have done now for 20 years.
  7. IanH

    IanH Active Member

    I hope your illness does not get worse but like me you will probably have variations.

    I was diagnosed FM 14 years ago but had symptoms of cfs for several years before that. The pain emerged after 4 years and I was referred to a rheumatologist who gave the dx fibromyalgia. I don't believe it is useful to label an illness fibromyalgia. FM is a symptom of an underlying illness, in my case ME/CFS. FM can be a symptom of many illnesses and all attempts should be made to identify the underlying illness and treat it. Otherwise it is likely to be CFS. In my case I have FM as a symptom of CFS. (I do believe CFS is an underlying disease as the immunological evidence is now overwhelming, as is the neurological evidence for many of the symptoms, including widespread chronic pain). The "FM" has remained unchanged over the 14 years. I have had periods where I was worse but then it improved - so its been cyclical. Some of my symptoms have worsened, lower back pain, nausea, weakness and my response to colds and flu are much more serious and lengthy.

    AS an aside:
    My wife was dx CFS 5 years ago and my daughter was dx MCS 5 years ago and our grandson may have cfs too, currently under investigation. My wife and daughter's symptoms are also variable. Now I also suggest that we all have the same illness. I was dx fm - sent to a rheumatologist, my wife dx cfs - sent to a neurologist, my daughter dx mcs - sent to a endocrinologist/gastroenterologist. The label you get depends on who you get sent to. Most people with dx fm do not have the tender point pattern (which was brought about by the dominance of American Insurance Companies over medicine). This illness has such varied symptomatology that each consultant is handling only one part of the elephant. It would be useful for some research to be done to show whether people get worse and in what way (i.e. which symptoms) also do people get new symptoms over time, with age. Just not enough money put into research. Now that Insurance companies are writing in exclusions of cfs/fm it will be harder for research to get funding.

    There is also so much BS written about this illness. When I first got it I was told that 80% of people recover in 5 years. TOTAL RUBBISH. There were and are no studies to show this.
    [This Message was Edited on 01/22/2011]
  8. karkel

    karkel New Member

    I work for a federal health insurance company. I went to a rheumatogist that says I have FM, I do have the tender points. I have been tested prior for lymes etc....I feel bruised all over and stiff and tired that all my symptoms in a nut shell,mine came on after I got breast implants and had 4 breast surgeries in 4 years I thought removing them would make the pain go away...but it didn't.Worse mistake of my life, was 100% healthy before I made that dumb mistake
  9. TigerLilea

    TigerLilea Active Member

    Hi Jamin - What was the cause of your FM?
  10. hi all,

    ive had fibro and cfs for many years now.and recently i had to visit my rheumatolagist again,as i have developed osteo arthritis of the hands.i also have it in my spine.

    i was told by my rheumy that fibromyalgia is not life threatening,or progressive.but it is chronic and very destressing.

    he said,people who develope fibromyalgia have underlying conditions,that are yet to show is these conditions that get worse,and then flare up the fibro.

    and he,s telling the truth there,let me tell allergies to things developed and got extreme,as did my arthritis is more painfull too.

    i find my cfs flares more often,but i,d imagine it is because im struggling to be able to keep doing my part time job,with all my new conditions that are worsening now.

    take care,fran.
  11. Mikie

    Mikie Moderator

    I wish there were a path we all followed but each of us is different. A lot depends on whether one has other conditions (most of us do). Since there is no known cause and no know cure, about all we can do is treat our symptoms. Start with the worst symptom first. Take them one at a time. Sometimes, when you treat one symptom, it helps the others.

    Ten years ago, I was bedridden most of the time and on Morphine for pain. Three years ago, I was well enough to work part time. Now, something else is wrong and I suspect Sjorgen's. My fatigue is bad again and I had to quit my job. I am working on the new symptoms one at a time and it's like starting over. Oy!

    Each of us has to do our own research and work with our docs. This is a great source of info and support here. Everything which has helped me is something I first learned of here.

    Best of luck to you.

    Love, Mikie
  12. IanH

    IanH Active Member

    I know of two people whos cfs started after repeated surgery. One, like me had blood but the other did not. I suspect the immune system in some people is affected by this repeated surgery, resulting in dysfunction - which becomes cfs. Both were women but the surgery was general in both. One was suspected post-operative infection.